Wow, I realized it’s been a hot minute (actually 2 months) since I shared an update on my health. You can assume that no news is good news!
I’ve been busy life-ing. I’ve been focused on improving my movement. I haven’t used a cane since October. I’m up to walking an hour at a time up to 3mph. I have started some weight training at home, basically trying to get back into shape.
All this to say, I’m feeling fine. I still have continual pain medication and other meds to deal with side effects. Other than some fatigue I’ve been feeling pretty good.
I’m still getting IV chemo (Enhertu) every three weeks. I’ve been on this medication since February 1 of last year. I’ve been grateful to have tolerated it so well.
There are hints though that it might not be working so well any longer. My scans in December were “fuzzy” and I just had another PET scan this morning so I will learn soon if the cancer is quiet or progressing. My bloodwork tumor markers have been rising pretty steadily (bad) so that is a concern.
I next see my oncologist at the end of this month and we will determine then if I need to change meds or not. As you all know, it’s best to change the medication if it is not keeping the cancer quiet. There are a finite number of medications though so the goal is to stay on each one as long as possible.
Our family is headed out on a little holiday later this week to celebrate life. Life is short! Go do “all the things” – even if it doesn’t seem like the best timing.
Onward!
Cheering on the BroncosEvelyn and Glen skiingMaddy and Grandma SeifertI dropped something off at Ev’s apartment and we snapped a quick selfieWith my MBC Sisters. I went to a conference with 350+ women living with MBC. Such love!
It’s been an interesting week, regardless of who you are and what you support. I’m writing because one of the Executive Orders this week puts a freeze on communications from many Federal agencies including Health and Human Services (HHS) and the National Institute of Health (NIH).
This is a serious situation as it is already putting cancer research at risk. I work closely with a breast cancer researcher at the University of Colorado (Dr. Matt Sikora) who conducts basic research through grants from NIH. Based on communications he received, it looks like his research lab may lose funding. This funding supports the basic cancer research that leads to new treatments. We all know how I feel about new treatments!
Well, that is a lot. What can I do as one individual?
I ask that you take 10-15 minutes to send an email to your elected members of Congress (you have 2 state Senators and 1 Representative). Believe it or not, staffers count the number of communications they get from constituents on a particular topic. While you might get a form letter response, don’t get discouraged. They will count your email! It will make a difference.
To help you, Dr. Sikora has drafted a sample email and provided links to find contact info for your elected reps as well as a link to where you can find the economic impact of cancer research in your state.
I’m happy to help anyone if you need it. Thanks for your consideration. Cancer has long been a non-partisan issue and should stay that way.
Onward!
Sample email text (you need to change things in bold)
Dear [congressperson]:
I am writing due to grave concerns with the freezing of communications at Federal agencies. Specifically, I am writing regarding HHS and the National Institutes of Health, including the indefinite suspension of council review meetings, review study sections, and travel. Suspension of these meetings and review sections jeopardizes biomedical research funding nationwide.
Currently, our state of Colorado receives nearly $600 million in funding for biomedical research from NIH, supporting over 7,000 highly skilled jobs and driving over $1.5 billion in economic activity. As a concerned constituent living in [Denver], and as a [patient living with cancer/research advocate/caregiver/etc], I urge you to make sure that money that has been allocated for NIH extramural funding, including all training and workforce development grants, remains committed. Loss of this funding would be disastrous for our local economy, and would drive major job loss including in highly trained university biomedical research personnel, including graduate students and postdoctoral trainees that make up the next generation of biomedical researchers.
NIH has always benefitted from robust bipartisan support, and I urge you to continue to commit Federal support to the NIH mission and extramural program, which ensures that our nation remains at the forefront of biomedical research innovations and advances in patient care.
As New Year’s Day winds down I write to say hello to all my friends and family, near and far. 2024 was actually a pretty good year for me (unlike 2023) and I’m optimistic this year will be even better.
I had a PET scan in December and the results were “fuzzy.” Well, that is the first word my oncologist used. Let me explain.
He agreed that imaging was not very reliable for me. However, the results showed additional uptake of the contrast in a few areas where I have known cancer (mainly in my spine). On the one hand, other areas seemed quiet and unremarkable. (I want to get a t-shirt that says “I’m unremarkable” – if you know, you know.)
Dr. Andorsky said the most important thing is how I’m feeling. I feel great! Really, I am so grateful for my new hip and my fentanyl patch and other meds, and the fact that I can get up every day and work, exercise, read, paint – you name it. On the other hand, my tumor markers have been slowly rising. They tend to be accurate in terms of whether cancer is active or not.
The other thing to consider is that there are a finite number of treatments so you want to make them last as long as possible. I was prepared to argue to stay on the same treatment and I didn’t need to do that at all! He suggested we stay on Enhertu and revisit in 3 months.
In other news, the tingling in my left arm has gone away. I will attribute it to the blood clot I had under my left collarbone and that by this time it has dissolved and so has my arm tingling.
So, I stay the course which is the best possible outcome. I get an IV infusion of Enhertu every 3 weeks. The cancer center is only 5 miles from my house so I’m able to get there and back quickly. A typical appointment is 3-4 hours for labs, an office visit and then treatment.
The rest of life is going swimmingly. We had a lovely (short) visit with family in Wisconsin. Glen, Maddy and Evelyn have hit the slopes already. Evelyn has been popping home now and again. Maddy has a short break from dance so she is home a bit more as well.
Maddy and I head to Texas to see her grandparents, it will be a short visit – we are looking forward to it regardless. I’ve booked a trip to see my BFF in LA for February and our family is making plans for a few family vacations in 2025.
I hope you are able to approach 2025 with optimism, enthusiasm and peace. I hope to see many of you this year. You are always welcome here – we have plenty of room! Seriously, we’d love to show you around Colorado.
Onward!
Annual Nutcracker BalletToulouse loved present debris!Selfie with Mom and AnnYou can’t visit Wisconsin in winter without bowling.
We are in the throes of fall and the Thanksgiving holiday is less than a week away. For many people, this time of year causes more reflection. For me, it’s mostly gratitude.
I’m grateful that I am able to celebrate another holiday season with my family. I’m grateful that most days I can live my life like I don’t actually have a terminal disease. I’m grateful for friends and family that support me and I’m grateful for science and scientific researchers who are working to find more treatment options for me.
I’m grateful that my oncologist is top of the game and is always a step a head of me. I appreciate that because, as you can imagine, I’m the kind of patient that comes with questions about new drugs and clinical trials.
Speaking of which, I spent all of yesterday afternoon researching clinical trials. Clinical trials.gov is a database of every clinical trial happening in the U.S. As you can imagine there are tens of thousands. Fortunately they have a decent search feature.
Even better are two trial search sites that focus on breast cancer. The Storm Riders site allows you to search for any trial related to breast cancer (any stage). It’s a fantastic resource. If you know anyone with breast cancer I hope you will share it with them.
The other site is Metastatic Trial Talk. This one is focused on stage IV, metastatic disease. In spite of searching and reading through many, many trials, I did not find any that were particularly helpful for the next treatment line. That was a little disappointing.
Last month my oncologist shared a trial with me for my next line that basically compares two different types of IV chemo. While that is fine, I’m really hoping for something that doesn’t require me to go in to the cancer center every week for an IV infusion.
I’m still taking Enhertu and the side effects have stepped up their game lately. Actually, I don’t know if they are side effects or just bad luck with something else.
I have tingling in my left arm that comes and goes. I had a Brain MRI and MRI of my cervical spine. The brain MRI was clear (yay!) and the cervical spine showed that the openings in some of my vertebrae where nerves exit are a bit too small and pinching the nerves, potentially causing the tingling.
What is causing this in my cervical vertebrae? I met with my neurologist and they are convinced that it is not a result of cancer. My oncologist thinks the same thing. What did they say? “This kind of thing can happen when you are 50+.” I don’t buy it. I think there is something going on that is causing it, likely cancer.
I also have a blood clot under my left collar bone. That could be causing the tingling. I’m on blood thinners now to prevent any new clots from popping up.
To top things off I’ve been having episodes of vertigo. My PT did the Epley maneuver and that helped initially. However, the episodes continue.
So, where does this leave me? Good question.
I will have an infusion of Enhertu on December 4. I will have a PET scan the following week followed by a telehealth appointment with my oncologist. My CA 27-29 tumor markers have been rising, so that’s not great. At that appointment we will know if the cancer is quiet or progressing. If it’s quiet, we continue on with Enhertu. If it’s progressing, we change treatment.
In between my Enhertu infusion and scan I will need to travel for work. I don’t mind traveling for work but it’s certainly not fun. It’s harder for me now than before my diagnosis so I try to go only when I really have to.
That’s my cancerland part of life. In the rest of life, I’m still working FT. I’m almost finished with a painting project, I’ve started painting with watercolor, and Glen and I went to the theater to see A Christmas Carol. The girls are off in Vienna now, exploring and having some quality sister time.
I hope that all of you have a meaningful Thanksgiving holiday, whatever that looks like for you.
Onward!
Glen and I at A Christmas CarolMy buddy resting with meMaddy turned 18 mid-November
Hello friends and family! Welcome to fall (almost). The nights are getting cooler here and I’ve seen photos from others that the aspens are starting to change color in the mountains.
I write with good news. My PET scan of earlier this week shows that I’m stable. This is fantastic; it means that the cancer is not growing or spreading. The caveat is that lobular breast cancer sometimes doesn’t show up well on imaging. However, my blood tumor marker number dropped as well! The CA 27-29 gives an idea of how active the cancer is. A number of 38 or lower means the cancer is inactive. In mid-August it was 109. On September 11 it was 93! That was very welcome news!
The combination of the tumor marker dropping and my scan not showing progression means I can stay on the same treatment. I’m currently getting Enhertu every 3 weeks. I’ve got medications to deal with the side effects, overall I’m tolerating it very well.
I also spoke with my orthopedic surgeon this week. My recovery is going very well and he wished me a good time on my upcoming trip. He did mention several times how bad of shape my hip was in. I’m feeling grateful that I no longer have pain and hopefully I will be able to walk unaided soon. I still have some swelling and it’s hard getting used to walking since I’ve been using a cane for 2 years.
The symposium is 3 days long and the first day is focused on patient advocates. Maddy will come with me that day. The other 2 days are more research focused. We are excited to go and learn where research is headed for lobular breast cancer. My oncologist was not familiar with this conference and asked me to brief him on what I know. I’m more than happy to do that!
Not gonna lie – we are happy to go to Belgium as well. We should have one day where we can sight see. We will be in the city of Leuven which is east of Brussels. Watch for photos in the next blog post.
Life is good, right now for me life is great. I’m going to take it all in while also making sure I rest and don’t overdo it. Maddy may need to help me with that.
Like many things in life, medicine is not black and white. I’m reminded of this every time I have a test or conversation with my medical team.
Earlier in July I had a PET scan. This is one of the primary tools my oncologist uses to determine the status of the cancer. According to the PET, there was increased update / brightness on the image, potentially indicating progression or the cancer being active. However, my blood work (tumor markers) show things as steady, no progression. My tumor markers have been pretty accurate in general.
So, we have conflicting data, which makes decision making challenging.
Given that there are a finite number of treatments, the goal is to stay on each treatment as long as possible. Once you move off a treatment you can’t go back to it. The reason for this is that the cancer has mutated and figured out a way around the treatment so it wouldn’t be effective to go back and take the same medication after you have progression on it.
So, I’m in a situation where one piece of data says potential progression and another piece of data says no progression. What to do?
I will stay on my current treatment (Enhertu) but have another PET scan in 2 months, instead of the typical 3 months. This way we are not waiting too long if there is progression and if there is no progression then we just continue on.
This situation is stressful in spite of my trying not to be too stressed out about things. The uncertainty is hard to deal with.
Working in my favor are 2 upcoming months of lots of exciting things including travel. The best – and only – thing I can do is focus on the here and now and enjoy each day to the fullest. I hope you do the same.
Early morning sun on one of my neighborhood walks.
Hello friends and family. We are well into March and you, like us, are experiencing the crazy weather that happens when Mother Nature is trying to change seasons. After a week of 60 degree temperatures, last week we got close to 17” of snow at our house and snow days from school (even the University closed for a day).
The view from our bedroom window just after the snow ended. We lost the little tree in the center of the photo and some of the larger bush branches by the fence.
Anyway, I’m looking at spring as a time for renewal and new beginnings. I started a new medication in February and it appears to be working based on the blood work. I’m getting IV chemo called Enhertu. It takes about 3 hours to get all the various meds dripped into me. Fortunately I’m not having much in the way of serious side effects: fatigue, some neuropathy in my hands, and gas. So, not great but overall not a big deal.
I’ve talked a lot about the tumor marker CA 27-29. It’s a way to get some data about how well a particular treatment might be working. Oncologists don’t make treatment decisions on tumor marker data alone but it’s a good proxy.
My blood is drawn and sent off to Mayo Clinic in Minnesota for analysis. The results show up in my medical portal a few days later.
A number below 38 indicates no active cancer.
When I was diagnosed in July 2019 my CA 27-29 was 122.
The number had been climbing the past year, yet my scans didn’t indicate any progression.
I peaked at almost 800.
My March number was 130! Yippee!
It’s clear from this chart of my tumor marker numbers that the cancer does not like the Enhertu chemo! Let’s hope that my scans in April confirm this.
A graph of my CA 27-29 tumor marker starting in July 2019 when I was diagnosed. Any value under the red line indicates no active cancer. I started taking Enhertu chemo right at the peak on the right side. The Enhertu seems to be knocking down the cancer activity. The numbers on the x-axis are days since diagnosis
Hi everyone. It’s mid-February, time slipped away from me. The main message to you all is hello, I’m still here 🙂 working to get back to 100% and staying positive.
Last month I had 10 days of radiation (20 rounds total). The lumbar spine and S1 showed cancer growth and the recommendation was to zap it. They zapped it all right. That radiation took me out of commission for quite some time. The radiation was from my L1 down to my S1 and from both my front to back and back to front. Anyway, it was a lot of radiation and I did not do well with it.
Nancy came out for a week when Glen was traveling and drove me back and forth. I’m super grateful for that. She also helped with so much stuff around the house I can’t begin to thank her properly.
Evelyn & Keiron came home to make potstickers and visit with Aunt NancyNancy took me to Lazy Boy to order this bad boy which should arrive in a few weeksI finally have handicap placards, mostly making my drivers very happy
The second week of radiation was hard. I became nauseous and could not keep anything down for over 24 hours. I got some extra IV fluids and switched my diet which helped some. I’m still not a fan of eating right now. The further I get from the radiation the better I’m feeling.
I turned right around from the radiation to start IV chemo. I have a new medication now (previously I was taking Xeloda oral pills). This will be every 3 weeks and an infusion so I have to go in to the cancer center.
The new medication is called Enhertu (Trastuzumab deruxtecan). The type of medication I get is based on my cancer sub-type. It turns out that this medication was just approved for my sub-type in summer 2022. Read that again. Prior to summer 2022 this medication would not have been an option. This is why research for new treatments is so critically important. Since I have been diagnosed there are at least 3 new medications approved to treat metastatic breast cancer. Please continue to spread the word about the importance of research for MBC.
Dance competition season has begun and Glen was taking Maddy to Colorado Springs for the weekend for dance. We felt like it would not be a good idea to have me stay home alone after this infusion. Ann came out and took me to my first infusion and then stayed through the weekend. Fortunately, I did not have much in the way of side effects – just fatigue. So, Ann and I had a lovely visit. She also helped with finishing up some errands and doing some shopping. We are grateful for her taking the time to come (even if all we did was work and sleep!).
Ann came with me to my first IV chemo infusionMy mom knows how to make me smileCompetition season! This is the “tough” look of me with the champ.
So, today I’m feeling “ok”. I don’t have to take any medication regularly. I do have a fentanyl patch for pain. I’m mainly trying to get my right hip back in shape. The good news there is that both my physical therapist and acupuncturist think the problem is a very tight hip flexor (not cancer). If that really is the case then hopefully I’ll be walking better soon.
I’m super appreciative of my neighbors who have driven me to appointments, ran to the pharmacy for prescription pick ups, brought food or coffee, and sent cards. It all means a lot to me and my family. We appreciate you.
Tomorrow I’ll be watching the big game 🏈 (hopefully feeling well enough to attend a watch party). Of course my beloved Packers are not in the running, the commercials should at least be entertaining.
Be well, be kind and get out there and move as best you can. Sending love to you all in this Valentine’s month and beyond.
I hope the new year is treating you well. We were fortunate to be able to spend time with family in Wisconsin and then Rob, Paul and Cara came out to do some skiing over New Years. Escaping to the mountains and Winter Park is always a good time!
It’s been sunny here – pretty typical for Colorado. I love the sun so I celebrated the winter solstice and the increase of solar radiation 🌞. I’m very happy the sunset continues to move later and later into the evening.
While I welcome more radiation from the Sun, I’m less thrilled with the fact that I will need to have some medical radiation ☢️. New pain developed in my left hip and leg a few days after Christmas. After an MRI and appointment with my neurosurgeon, we’ve confirmed the pain is real and related to progression of the cancer.
It looks like the L4 and L5 vertebrae are growing more tumor. Recall in October I had surgery to remove tumor on my L4 and L5 that was pinching my spinal cord. It’s grown back. It also looks like my S1 vertebrae (sacrum, just below the lumbar region) has notable progression. This is new cancer activity. Clearly the cancer is active and has grown back over the past 2 months.
I stopped taking Ibrance in September, I continued to receive Fulvestrant shots through early November. I started taking Xeloda (oral chemotherapy) in December. I continue to take Xeloda.
So, the cancer is active and we need to figure out how to stop it. The best path forward is to stay on my medicine so it has the opportunity to get the cancer under control.
Surgery would require me to stop my cancer medication. That’s not a great option because this would allow the cancer to continue to grow. My medical team has told me radiation is the best option.
At this point I’m waiting for the cancer center to call me to set up the appointments. I will have an initial appointment where they plan out what they are going to do and then I will go to the cancer center daily for the radiation treatment.
I’m grateful I have an option other than surgery and I’m looking forward to working with the radiation team to get started. In the meantime I’ll be working as I can and aiming to keep moving. My physical therapist has given me many good exercises and I’ve ordered some walking poles specifically designed for recovery. The poles should arrive this coming week and I’ll be getting outside as soon as I can with them. (Neighbors, if you see me, come on out and join me – I’d love the company.)
I hope that you all are having a great month and are doing all the things that make you happy and that are good for you.
Onward!
Drive up to Winter Park. Rob drove and the 17 yr olds rode with usRocky Mountains – near Berthoed PassAlmost to Winter ParkPuzzle MastersSki bumsDrive home, Glen and Rob are cut out of the photo.
Life As I Know It 